quality of life of caregivers of patients with intractable epilepsy
TRANSCRIPT
developing countries publish their work in journals notindexed in MEDLINE for different reasons (Gibbs, 1995).
Furthermore, the complete data extraction was per-formed by only one person, whereas a second personre-extracted data from only a sample of half of the studiesinstead of all of them. With two or more people participat-ing as guards against errors, and if there is good agreementbeyond chance between reviewers, the clinician can havemore confidence in the results of the systematic review(Guyatt & Jaeschke, 2008).
ACKNOWLEDGMENT
I confirm that I have read the Journal’s position on issues involved inethical publication and affirm that this report is consistent with thoseguidelines.
Disclosure: The author declares no conflicts of interest.
Jorge G. [email protected]
University of Western OntarioLondon, Canada
REFERENCES
Gibbs WW. (1995) Lost science in the Third World. Sci Am 273:92–99.Guyatt GH, Jaeschke R. et al. (2008) Summarizing the evidence. Users'
guide to the medical literature. McGraw Hill, Chicago, pp. 523–542.Mbuba CK, Ngugi AK, Newton CR, Carter JA. (2008) The epilepsy treat-
ment gap in developing countries: a systematic review of the magni-tude, causes, and intervention strategies. Epilepsia 49:1491–1503.
Quality of life of caregivers of patients withintractable epilepsy
To the Editors:About 25% of epilepsy is intractable and may require
epilepsy surgery. However, up to 30% of patients undergo-ing presurgical evaluations eventually do not qualify forsurgery (Berg et al., 2003) and face the prospect of ongoingseizures. Epilepsy reduces quality of life (QoL) of patients(Baker et al., 1997), but may also influence QoL of peoplecaring for them. We studied whether QoL of caregivers ofadults with intractable epilepsy was reduced and whichfactors accounted for this.
Questionnaires were sent to 63 patients ineligible forepilepsy surgery (>16 years old, IQ > 80; Zijlmans et al.,2007) and their main caregivers. Demographic and seizureinformation was obtained. Caregivers expressed burden ofcare on a Visually Aided Scale (VAS; 0–100%), comparedto what they imagined life would be like without thepatient’s epilepsy. Both patients and caregivers wereadministered two generic, validated questionnaires, theEuroQol (EQ5D) (resulting in a utility score and a generalQoL-VAS-score) and the Rand 36-item Health Survey(RAND-36). The RAND-36 covers eight domains,
summarized in two main scores: a mental (MCS) and aphysical component score (PCS).
EQ5D utility scores were compared to the Dutch popu-lation (Hoeymans et al., 2005). Age-matching was not pos-sible. Results from RAND-36 (Ware & Ksoinksi, 2001)were compared to the age-matched Dutch population
Table 1. Clinical and demographic
characteristics of patients and caregivers
Patients (N = 37) Caregivers (N = 37)
Epilepsy characteristics
Mean duration of
epilepsy in years
27 (range: 8–52)
Seizure frequency last
2 years
Median (/month) 5 (range: 0–150)
Seizure free (%) 3
<1/month (%) 8
1 or more/month (%) 89
of which daily (%) 19
Using >1 antiepileptic
drug (%)
89
Experiencing adverse side
effects of antiepileptic
drugs (%)
64
Demographic characteristics
Mean age in years 39 (range: 20–66) 46 (range: 24–68)
Female (%) 46 60
Paid employment (%) 46
Relationship to patient (%)
Partner 60
Parent 32
Other 8
Cohabiting (%) 76 76
Hours of care given per
week (mean)
10
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Epilepsia, 50(5):1289–1300, 2009 1294
(Aaronson et al., 1998). The effects on the caregivers’MCS of seizure frequency (median and below vs. abovemedian), patients’ MCS (likewise), employment status,and burden of care VAS-score were studied. Comparisonswere by two-tailed t-test or Mann-Whitney U test.
Thirth-seven patients and caregivers responded(Table 1). EQ5D utility-score of patients was significantlyreduced (0.80 vs. 0.88; p = 0.04; QoL-VAS 72%) and ofcaregivers possibly reduced (0.83 vs. 0.88; p = 0.30; QoL-VAS 80%) compared to Dutch population. Patients’RAND-36 scores were lower on MCS, PCS, role physical()38 points), social functioning ()15), mental health()13), vitality ()20), and general health ()18).
Caregivers of patients with intractable epilepsy scoredlow on vitality ()13 points; Fig. 1) and seemed to havereduced mental well-being (MCS )3 points, p = 0.07).This was not influenced by the patients’ mental well-being,seizure frequency, or employment status. There was an
Figure 2.
Effect of patient characteristics and burden of care (up and including median vs. above median) on mental component
score of caregivers. The lines represent median and quartile scores. Caregiver’s MCS was not influenced by the
patients’ mental well-being, seizure frequency, or employment status. There was a possible association with self-
reported high burden of care (p = 0.07).
Epilepsia ILAE
Figure 1.
Proportional difference of SF-36 scores of patients
(blue squares) and caregivers (orange squares) from the
average Dutch population (Aaronson et al., 1998).
Positive scores represent better scores. Significantly
different caregiver scores (p < 0.05) are marked with
an asterisk. A significant difference was found for
patients on the MCS, the PCS, and the domains: social
functioning ()15 points), mental health ()13 points),
vitality ()20 points), general health ()18 points), and
role physical ()38 points). This last domain describes
experienced physical restriction in reaching goals in life.
A significant difference was found for caregivers on the
vitality domain ()13 points) and a near significant differ-
ence for the MCS ()3 points; p = 0.07).
Epilepsia ILAE
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Epilepsia, 50(5):1289–1300, 20091295
association, however, with self-reported high burden ofcare (Fig. 2), suggesting that individual coping style is adeterminant factor in the mental health of caregivers.
Sample size was small, and our results should beconfirmed in a larger group. EQ5D-scores were probablyflattering in this relatively young group, as age adjustmentwas not possible. Our patients were well motivated to pursueepilepsy surgery, which may have biased the results towardcertain personality characteristics. This limits extrapolation.In clinical care, the well-being of caregivers should beconsidered. Interventions could focus on individual copingstyle. We recommend support groups or counseling for care-givers of patients with intractable epilepsy.
ACKNOWLEDGMENTS
We thank all patients and caregivers who participated in this study. Wealso thank Chad Gundy and Neil Aaronson from the Netherlands CancerInstitute for providing us with extensive data of Dutch population scoreson the RAND-36.
The study was financially supported by the Netherlands Organization forScientific Research (NOW), grant no. 945-05-039.
We confirm that we have read the Journal’s position on issues involved inethical publication and affirm that this report is consistent with thoseguidelines.
Disclosure: None of the authors has any conflict of interest to disclose.
Judith van Andel1
Maeike Zijlmans1
[email protected] Fischer2
Frans S. S. Leijten1
1Dept. of Neurology and Clinical Neurophysiology,Rudolf Magnus Institute of Neuroscience,
University Medical Centre Utrecht, Utrecht,The Netherlands
2Julius Center for Health Sciences and Primary Care,University Medical Centre Utrecht, Utrecht,
The Netherlands
REFERENCES
Aaronson NK, Muller M, Cohoen PD, Essink-Bot M-L, Fekkes M,Sanderman R, Sprangers MAG, Velde te A, Verrips E. (1998) Trans-lation, validation and norming of the Dutch language version of theRAND-36 health survey in community and chronic disease popula-tions. J Clin Epidemiol 51(11):1055–1068.
Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D. (1997) Quality of lifeof people with epilepsy: a European study. Epilepsia 38(3):353–362.
Berg TA, Vickrey BG, Langfitt JT, Sperling MR, Walxzak TS, Shinnar S,Bazil CW, Pacia SV, Spencer SS. (2003) The multicenter study ofepilepsy surgery: recruitment and selection for surgery. Epilepsia44(11):1425–1433.
Hoeymans N, Lindert van H, Westert GP. (2005) The health status of theDutch population as assessed by the EQ-6D. Qual Life Res 14:655–663.
Ware JE, Ksoinksi M. (2001) The RAND-36 physical and mental healthsummary scales: a manual for users version 1. 2nd ed. Qualimetric,Lincoln.
Zijlmans M, Buskens E, Hersevoort M, Huiskamp G, Huffelen van AC,Leijten FSS. (2007) Should we reconsider epilepsy surgery? Themotivation of patients once rejected. Seizure. Published online:4-Dec-2007; doi: 10.1016/j.seizure.2007.10.006.
Knowledge, attitudes, and practice ofCameroonian medical students and
graduating physicians with respect toepilepsy
Health professionals need to be aware of their patients’beliefs about illness, and alternative treatment options thatpatients may choose (Sands & Zalkind, 1972). This need iseven greater when it concerns highly prevalent and stigma-tizing diseases such as epilepsy. Epilepsy is a major publichealth problem in Cameroon, with some areas havingprevalence rates as high as 6% (Dongmo et al., 2000;Njamnshi et al., 2005). We have recently found that sec-ondary school students in Batibo, a rural area in Cameroon,have a fairly good knowledge of epilepsy and, therefore,could serve as appropriate channels of education for thegeneral public in order to increase awareness and reducestigma in epilepsy (Njamnshi et al., 2008). Furthermore,the human resources needed for optimal epilepsy care pro-vision do not match the demand in developing countrieslike Cameroon [World Health Organisation-World Federa-tion of Neurology (WHO-WFN), 2004]. Therefore, medi-cal students and young physicians in Cameroon need to beadequately educated about the beliefs and practices con-cerning epilepsy, given that perceptions are influenced byculture and traditional beliefs. An understanding of suchbeliefs and practices among medical students and youngphysicians themselves is an essential first step for theimprovement of epilepsy education in medical schools inCameroon. Studies in Brazil (Fonseca et al., 2004) and
Table 1. Demographic characteristics of the
377 study participants in the FMBS*
Number Percentage
Age (years)
<20 119 31.6
‡20 258 68.4
Sex
Female 165 43.9
Male 212 56.1
Level of education
Preclinical (Year 1–3) 160 42.4
Clinical (Year 4–7) 150 39.8
Physicians (just graduated) 67 17.8
*The Faculty of Medicine and Biomedical Sciences (FMBS) has
an undergraduate student population of 650, and was the only
medical school in the country at the time of the study in 2006.
The first 3 years of training are preclinical; the fourth to the
sixth are the clinical years, whereas the seventh year is reserved
for the MD research project. All students speak French and/or
English.
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